Joe – South London

My story begins in February 2015 when I was struck down with what I assumed was just another terminal case of “man-flu”. Given that it was baltic outside I didn’t think anything of it and after a week of bedrest I was back up and running.

Fast forward to the end of May and I went for what I thought was going to be a routine sexual health screening, which I usually had about twice a year. I didn’t think anything of it. The following Monday I woke up to a voicemail asking me to call the clinic back. They were vague but told me that they needed to repeat a test so I went straight back in. The nurse I met with then said to me, “So we’ve had a positive result for HIV but we’re just going to repeat the test to be sure”. She was very blasé about the whole thing (presumably she’s a lot more familiar with these conversations than I was), so I asked “Is this a diagnosis?”. She said it wasn’t official but it’s quite rare to get a false positive, so not the most comforting experience. I remember shaking and filling with panic because I thought I was going to die. I was told I would know for sure by the end of the day so I decided to go to work to take my mind off it.
Later that afternoon I called to chase the result and was told I’d have to sleep on it as it was delayed. Possibly the worst nights sleep I’ve ever had. The next morning I explained to my manager that I was expecting a call from the hospital with some bad news so I may need to leave early. That call came and off I went. I was then officially diagnosed with HIV on Tuesday 2nd June 2015 at the age of 23.

I did tell the person I knew to have passed it to me, he didn’t believe me but as far as I was concerned, my job was done. I’ve been asked before if I think he knew already, for my own sanity I have to believe he didn’t. And anyway, it wouldn’t change the outcome. Oh and fortunately there were no other sexual partners between then and my diagnosis.
If I can take 1 positive from having HIV (if you’ll pardon the pun), it’s that for 7 years, since I was 16, I had “the fear”. Every time I’d get tested I’d worry about receiving that dreaded news. I no longer have that.

The consultant I met with was, and is bloody marvellous, much more reassuring than the cold nurse who broke the news. She explained to me that they would do further blood tests to analyse my viral load and test the medication I respond to. It turned out that I had a very ‘ordinary’ strain which responded to everything so on the 11th August after meeting with a dietician and pharmacist I began my antiretroviral treatment (ART). Just a month later in September they confirmed that I was undetectable and I have been ever since. That feels amazing. We’ve come a long way medically and I can’t thank the staff at my HIV clinic enough for holding my hand through the process and for getting me to that point.

I should mention that immediately after I was diagnosed I told my best mate. She’s incredible and simply my best person. She’s my Jill from “It’s a Sin”, which if you haven’t watched, YOU MUST! Everyone should have a Jill.

I’ve always been much better at communicating with my friends than my family so a few days later I actually started a WhatsApp group called “The Positive Team” with a handful of my nearest and dearest. Back then I had no clue what I was talking about, and neither did my friends, so the purpose of the group was primarily to share updates on my progress, but also to educate each other. And that we did. To this day I still occasionally share developments or interesting articles. Knowledge is power and all that.
I will always be grateful for the amount of support I received and still receive from my friends and family. At that time I was always scared of how people would react to hearing my news, but they all responded with love and kindness. I only had 1 slightly negative reaction from a relative. I think because I waited a week to tell them I probably sounded quite casual down the phone so they didn’t think I was taking it seriously enough. They gave me a few harsh words which didn’t go down too well at the time. But soon after they apologised and have since become a huge support to me.

Anyway, back to September 2015. Learning about HIV and what “undetectable” meant was a real turning point for me. I remember when I told people, I’d always say something like “Oh but it was self-inflicted so it doesn’t deserve sympathy”. I was quite self-deprecating about it because I felt that I’d been careless and maybe I had it coming after a rather promiscuous period. I thought I was playing with fire and finally got burnt.

One day one of my friends sat me down and basically told me to snap out of it. He told me it doesn’t matter if I slept with 1 guy, or 100 guys, these things happen, but we pick ourselves up and dust ourselves off. He’s so right, and I would say the same to anyone who was feeling that way.

I also felt incredibly guilty when I thought back to guys I’d spoken to on Grindr and pretty much dismissed because they told me they were positive. I was ignorant, and when it came to dating I defended ignorance for a long time because I knew I had been, and I thought, “how can I expect all the men I date to know about something they probably don’t have?”. I’m a little less tolerant of ignorance these days. I feel that in 2021, it’s a responsibility for gay men to at least have some basic understanding of HIV. Especially if they’re hooking up on Grindr. Side note; can we please stop asking each other if we’re “clean”? It suggests that people with HIV are dirty and that’s not cool. Anyway, I digress…

On the whole I’ve had pretty positive reactions (the puns just write themselves) from guys I’ve dated. Some I’ve educated and some have already been clued up and thought nothing of it.

I was taking pills twice a day but in January 2018 I was told that my medication was changing to once a day. It might not sound like a big deal but it means I’m thinking about it half as much. And you try finding a time that works 7 days a week, every 12 hours, around work, going out, and hangovers.

Going to once a day was a great moment. And a reminder of how far we have come with this virus. I’ll never forget when I first met my consultant and she said to me “I’ve been a HIV specialist for 16 years and when I started, there were no treatments. I’d give you some pointless antibiotics and send you on your way. Now you have a choice of medication”. She said that there’s no reason not to believe there could be a cure within my lifetime, and I really believe that too. Although, even now there’s no reason to think that I can’t live just as long as anyone else.

I am very grateful that I was born when I was, and not 20 years earlier. It’s heartbreaking to know that back in the 1980’s and early 90’s, people that were tested positive would be quarantined as a “threat to society” and pretty much left to die. It hardly took any time at all for the stigma around HIV to form, and unfortunately it’s taking generations to get rid of it. But we are getting there.
There are some incredible medical professionals, scientists, charities, campaigners and activists around the world, working hard to develop further treatments, raise awareness and offer help to those affected by HIV.
Nearly 6 years later and my condition is stable and at the back of my mind. I pop my pills without even thinking about what they’re for, I see my consultant twice a year and that’s it. Easy peasy.
My advice to anyone who is worried about HIV, or coming to terms with a diagnosis would be; educate yourself, get tested, know that it’s not the end of the world or the death sentence it once was, and most importantly, remember you’re not alone. There is so much support out there from charities, the LGBTQ+ community, as well as your own friends and family. I surrounded myself with good people and I haven’t looked back.

This is the first time I’ve shared my full story publicly and it’s been extremely liberating. I hope you’ve found it interesting and maybe even inspiring. Let’s continue sharing our stories and spreading hope.

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